She's FINE - so we the authorities don't need to do anything but YOU should...

Discussion in 'I care for a person with dementia' started by JayGun, Oct 31, 2015.

  1. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    #1 JayGun, Oct 31, 2015
    Last edited: Oct 31, 2015
    Take the morning/day off to get her to all her medical appointments because otherwise she won't go. Ring them and apologise for her non-attendance and rearrange another appointment, booking yet another day off when she says she doesn't feel like it today.

    BUT SHE'S FINE.

    Attend said medical appointments and sit slightly behind her in order to nod or shake your head to indicate whether what she's saying has some basis in reality or is a complete and utter nonsense.

    BECAUSE THAT'S COMPLETELY NORMAL AND ROUTINE THING TO DO FOR PEOPLE WHO ARE "FINE".

    In fact, go everywhere with her now because she's visibly vulnerable when she's out, and a target for the unscrupulous. She's also not really safe on her own out and about any more due to all the falls and her inability to access public transport or cross roads by herself any more.

    COS THAT'S NORMAL FOR PEOPLE WHO ARE "FINE".

    Nearly get hit by a car yourself when she runs out into the road like a naughty toddler, but unlike a toddler you can't put her on reins.

    BUT SHE'S FINE. (YOU"RE A NERVOUS WRECK BUT WHATEVER.)

    Do all her shopping because the only thing she can cope with buying anymore is bread and biscuits. Which is lucky because that's pretty much all she eats.

    BUT SHE'S FINE.

    Supervise her 24/7 because she wanders and has a tendency to turn up places in distress, very frightened and confused.

    BUT SHE'S FINE.

    Supervise what she's wearing because she tends to wear exactly the same clothes whether it's a heatwave or a snowstorm.

    BUT SHE'S FINE.

    Remind her to bathe and wash her hair because she doesn't know what day it is, so she doesn't know it's bath day or hairwash day.

    BUT SHE'S FINE.

    Remind her to use the loo and get out of her chair now and then because otherwise she can sit there in front of the tv for hours and hours and hours and then have an accident.

    BUT SHE'S FINE.

    Clean up the mess when she has an accident because she "couldn't be bothered to do that now/didn't feel like it/ didn't have time."

    BECAUSE THAT"S STANDARD BEHAVIOUR FOR SOMEBODY WHO IS "FINE".

    Turn her heating off when it's 26 degrees outside and she's whacked it all the way round to the max "because it didn't come on".

    BUT SHE'S FINE.

    Go down there to turn her heating on when you ring her to remind her to eat or take her pills and you can hear her shivering.
    Also make her put the cardigan on that's sat over the arm of the chair next to her, and press "ON" on the electric fake gas fire that you had fitted because you hoped it would stop her fiddling with the central heating.

    SHE'S FINE THOUGH.

    Ring her and remind her to eat and take her pills a few times every day.

    YOU KNOW, BECAUSE SHE'S FINE.

    Go down there immediately every time "the tv won't work" because she can't work the tv all the time and she can't follow instructions over the phone, but it's Ok because it's a two mile walk and the exercise is good for me.

    SHE'S PERFECTLY FINE THOUGH.

    Realise that you've just got used to most of the downstairs curtains being closed all day every day "because people are looking at her".

    SHE'S FINE THOUGH.

    Get a Power of Attorney then register it with the bank so that you can pay all her bills for her because otherwise she wouldn't, and everything would get cut off.

    BUT SHE'S FINE.

    Remove all banking paperwork and her bank card from her home and give her pocket money - because she's been stuffing charity envelopes with hundreds of pounds every month and giving her bank details to people on the phone and strangers on the doorstep.

    BUT SHE'S FINE. AND DEFINITELY NOT BEING FINANCIALLY ABUSED BY THESE CHARITIES, CHUGGING COMPANIES AND INTERNET SUPPLIERS/INTERNET SECURITY SALESMAN ETC BECAUSE THEN WE'D HAVE TO DO SOMETHING.

    NO. NOT EVEN THE ONE WHO MORTALLY OFFENDED HER BY TELLING HER TO GET HER CARERS TO BUY HER A MAGNIFYING GLASS SO THAT SHE WOULD BE ABLE TO READ OUT HER CARD DETAILS OVER THE PHONE. (CARERS?! HOW VERY DARE YOU! SHE'S FINE.)

    Redirect her post to your house so that she no longer receives the charity begging envelopes full of raffle tickets etc because she treats the "suggested donation" part as a bill she has to pay. If it says "Suggested Donation £30" then that's what she sends them.
    Except that she doesn't really know which note is which any more so she puts three notes in, but not being sure which ones they are she puts another few in to be on the safe side. And in this way she could draw out £150 from the bank on Monday morning and have none of it left on Wednesday afternoon despite not having left the house except to post a couple of letters.

    SHE'S FINE THOUGH. THIS IS JUST SOMETHING YOU HAVE TO DO FOR PEOPLE WHO ARE FINE.

    Register the Power of Attorney with the phone company so that you can a) pay the bill and b) so that you can buy her a phone and stop her renting one from the phone company, because she could have bought many many many phones for the amount of money she's paid to rent the same one since 1985, and c) so that they will talk to you because you need to get Caller ID on the line so that you can buy a TruCall machine which will screen her calls - both to protect her from salesman/criminals and because she says "debt collectors" are ringing her to ask questions about her neighbours and she's giving them chapter and verse about who's got a new car, and who stays where overnight, and who she thinks isn't really disabled. You don't know if this is true or not, but you can forsee lots of trouble with the neighbours if she should mention it to them.

    SHE'S FINE THOUGH.

    Buy a TruCall box and set it up so that only friends and family can ring her.

    BECAUSE SHE'S FINE.

    Buy her a Buddi telecare system which she refuses to wear, even though she's had several falls. Because she's not going to fall again you see.

    SHE'S FINE THOUGH YEAH? TOTALLY.

    Be at her house when she gets up in the morning. (Anywhere between 5 am and 9 am.) And again when she decides to go to sleep. (Piece of string) And also if she gets up in the night. Because she can no longer manage cleaning her contact lens regularly and keeps injuring her eye by not putting the neutralising tablet in, taking the contact lens out out too soon, confusing saline solution with cleaning solution or by not cleaning it at all and putting a cracked dirty contact lens into her eye.

    OR

    Replace her £120 contact lens about every three to four weeks before it cracks, and take her to A&E regularly when she forgets to put the neutralising tablet in or takes the lens out too soon before it has worked.

    SHE'S FINE THOUGH. SHE'S NOT ENDANGERING HERSELF AT ALL. NOTHING FOR THE AUTHORITIES TO HELP WITH HERE.

    Fill in all forms and do all life admin - because she can't.

    SHE'S FINE THOUGH. THIS IS ABSOLUTELY NOT A SIGN THAT SHE NEEDS ANY HELP FROM THE AUTHORITIES.

    Guide her step by step through how to sign her name when she needs to - because she can't really write any more, and can't remember what to write either.

    SHE'S FINE THOUGH.

    Turn down invitations to people's weddings because you can't leave her unattended, don't have a holiday for the last six years or the next 15, realise that the idea of having a social life or even a gym membership is ridiculous and give up your whole life to supervising her.

    BECAUSE SHE'S FINE.

    Take whatever abuse she wants to throw at you very day cheerfully and compassionately, always validating her reality and negating your own.

    YOU NEED TO DO THIS BECAUSE SHE"S FINE.

    Fight back tears when an entire bus queue gives you sympathetic looks and pats your hand or shoulder as they get on because of the evil things she's been saying to you at the top of her voice for the last eight minutes while they all queued for the bus.

    BECAUSE THAT'S FINE.

    Buy her a cup of tea in town and then get back on the bus with her after she refuses to do the shoe shopping you came into town to do because you've upset her by not having the energy to cry and she likes it when she's able to make you cry.

    STANDARD. NORMAL. "FINE".

    Take anti depressants and sleeping pills just so that you can cope with the stress of dealing with her because her behaviour is so "challenging".

    WE WOULDN'T NORMALLY INSIST THAT YOU STAY IN AN ABUSIVE RELATIONSHIP AND DRUG YOURSELF SO THAT YOU CAN COPE, BUT WE WILL ABSOLUTELY EMOTIONALLY BLACKMAIL YOU IF YOU SEEM TO BE SUGGESTING THAT YOUR MENTAL HEALTH MATTERS TOO.

    BECAUSE SHE'S FINE.
     
  2. starryuk

    starryuk Registered User

    Nov 8, 2012
    1,299
    Oh JayGun, I don't know what to say....you sound at your wits end and I don't blame you. So sorry you are not getting support from 'the authorities'. I feel like letting out a few expletives on your behalf. :mad::mad::mad::mad:

    Hopefully there will be some ideas on here for you soon. Luckily for me, my mum was self funding and we put her into a CH in the end. My sanity and health would not have survived what you are going through. I was selfish. You and many others here are amazingly strong people. You have my utmost respect and admiration.
     
  3. 1954

    1954 Registered User

    Jan 3, 2013
    3,836
    Sidcup
    I can completely identify with your situation........you sound exactly like you wrote about my life and my mil x


    Sent from my iPad using Talking Point
     
  4. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    JayGun, I'm not too sure of what you have tried previously ( but I do remember your recent posts about the charities and scammers ) but could I suggest you print out your heartbreaking post and send it to the Head of Adult Social Care? And ask point blank for help asap?
    Because she is not fine, and you are suffering as a result.
    xx
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,600
    Female
    Scotland
    Jaygun - make copies of your post and send it to everyone you have dealt with and who has fobbed you off. A copy to the family section of the newspapers wouldn't go amiss either. Your frustration is powerful.
     
  6. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    I totally agree with Marionq, what you have written is incredibly powerful. A newspaper should pick it up and print exactly how this disease affects us carers. My heart goes out to you. It quite frankly isn't fine, not fine at all and you need and deserve help. Bless you xx
     
  7. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    442
    Print this on an A3 sheet in bold capital letters and send it to all the authorities involved. Then say you will send it to your MP, local and national papers if you do not get an urgent assessment and help.
    You are going to make yourself ill soon, and that will affect how you care for your mum.
    I think you have done a brilliant job with your mum without any help, but you need some NOW!
     
  8. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    I agree entirely with previous posts. Now that you've put it all down (and I hope it has helped you a bit), use it! Many people have no idea what you and so many others are going through. Sadly, this includes the kind of people that should be helping.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,731
    Kent
    JayGun you have posted from the heart and your post is one of the most powerful I have ever read from someone at the end of their tether.

    If you want your situation to move on it is in your hands. The authorities will believe everything is fine as long as you allow them to, but waving your post in front of their noses might just get the reaction you need.
     
  10. Pegsdaughter

    Pegsdaughter Registered User

    Oct 7, 2014
    129
    London
    When you send this letter to the authorities tell them you are sending it to your mp local councillor etc and do so with a note saying you are tired of being fobbed off, that this is the total lack of consideration, help and awareness around the subject. Say your own health is suffering which is an additional charge on the nhs, work is suffering etc etc. And that your life is totally joyless. I hope today is better for you


    Sent from my iPad using Talking Point
     
  11. Dazmum

    Dazmum Registered User

    I agree 100% with everyone, especially that it is one of the most powerful I have ever read here. You should certainly send it to everyone mentioned as I can't see how such a well articulated and desperate call for help could be ignored by anyone with an ounce of compassion or responsibility.
     
  12. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    This is like the other thread: Things they don't tell you.

    I'm horrified, reading it all. Absolutely horrified. Has health care really come to this?
     
  13. SallyDZ

    SallyDZ Registered User

    Oct 31, 2015
    1
    Sanity Measures

    JayGun,

    Know where you are coming from. Thank the Lord I do not live near my mother. All 3 off us could not cope with her and live some distance away otherwise we would be where you are.
    Helping her move home into Assisted Living took 3 years of negotiating over every damn scrap of paper she had accumulated over 40+ years. Her stress over the move resulted in her having fantasy 'disreputable men' (anthropormophic manifestations of her anxiety) turning up whom she would show round the house (?!!!) and she then accused them of stealing her jewellery. This resulted in emergency dashes needing 4 hour round trips. The 3 of us were brought to our knees,

    May I make some suggestions to save your sanity? Please, excuse me if you already have done these.

    1) Make Alzheimer's Soc and Age UK your friends. They have saved my sanity on a couple of occasions. Ask if they can help with an advocate for your mum. She has some rights and they might be able to intervene to get what she needs.

    2) Have you got a formal diagnosis of ALzheimer's or dementia? If not you need that in place. First stop her GP. If you have the following are useful;

    3) Apply for attendance allowance - keep it simple. Less is more. You should be able to get first and second level attendance allowance. First is for mild disabilties, 2nd level is for help at night time - which it sounds as though your mum needs. The alowances will go to pay for these. Get help from ALzhemer's or Age Uk in filling these in.
    4) When you have a formal diagnosis you need the consultant's signature on a form from the council. It is called Mental Incapacity Council Tax Exemption. Your mother will then no longer be paying Council Tax. Extra money for care.

    5) With a diagnosis of Alzheimers or Dementia there should be a Social Worker put in place. Can be a cleft stick. Check with your local A Soc or Age UK.

    I appreciate you must be at the end of your tether. However, I would strongly advise you do your research. Have a chat with your Coucnil about homes they approved. Then go and visit them. Because, for sure, you can't carry on as you are.

    Very best of luck
     
  14. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    Just make sure YOU don't tell everyone you are fine !! (I did, 'cos that's what carers say:eek:)

    With very sympathetic thoughts.....xx
     
  15. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    802
    Do everything others have suggested but also remember you don't have to carry on.It is not your responsibility although the authorities would like you to carry on believing it is.Walk away,let the inevitable crisis happen and they will have to step in.Easier to say than do I know.We all need to remember that we are as important as then person we care for,it is unreasonable to be expected to put our lives on hold but as long as we are prepared to do it nothing will change.Good luck,think of yourself,this is your life,you won't get another one x
     
  16. Flake

    Flake Registered User

    Mar 9, 2015
    222
    Thank you for putting into words all that goes on with this terrible disease. Much of what you say is mirrored with my Mum, and I do wish you well x x
     
  17. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    109
    Manchester
    This is a very true description of Alzheimers i care for my husband 24/7 its a full time job. I dont mind doing it because he is a nice man and always looked after me. It can be demanding and tiring but has some good points to.

    I looked after my nan aged 19 so its not new to me just a little rusty. Ive brought up two sons so i see it the same as looking after an adolescent child. My parenting skills come in handy and im very organized this works.

    We will get help when we need it.
     
  18. optocarol

    optocarol Registered User

    Nov 23, 2011
    315
    Auckland, New Zealand
    Jaygun, maybe I can help with one thing. I'm a retired optometrist and you mention your mother's contact lens (one?) cracking and costing 120 pounds. I take it from this that she wears a rigid lens? If so, this type of lens does not require soaking in a peroxide-based solution, which requires neutralisation. I wear these myself, have for 45+ years and have never used this kind of solution. Rigid lenses do require protein removal but this is either a tablet of a drop, neither of which requires neutralising either. Cracking a lens is usually due to rough handling.

    Just might remove one stress from your life by getting this sorted. PM me if you like.
     
  19. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    This is completely right - and I think it's one that social services forget - we don't have to care - they can't make us care. I think we are our own worse enemies sometimes, I adored my Mum, but after living with AD for 6 years I feel I've done my bit. I feel Social Services now need to step in. I've got a Social Worker and I have a carer that comes in to give Mum breakfast and lunch 4 days a week whilst I'm in work and I'm grateful - but it's about everything else - the toilet full of poo and pee, the wandering at night and during the day, the sundowning every day, the screaming, the abuse.
     
  20. angelface

    angelface Registered User

    Oct 8, 2011
    1,086
    london
    Just sending all the support I can muster, no carer should have to put up with the things that you are.

    The trouble is -no one asks you if you will take it on,it just somehow happens. Escaping from it seems impossible As you say,it could all go on for years yet .

    What I would suggest is you gather all the support you can,and look at what You need. I ended up with a counsellor to do this.

    Then you start gradually to reduce your input in helping mum.At each stage tell SS what you have done and how mum is managing with it. Eventually a crisis point will come that SS will have to deal with.

    Sorry if I sound cold blooded. This is a matter of survival -Yours. I have been there,and pray I never have to be there again.
     

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